09/03/2025 - 'Birthday balls and Gary the Gherkin' by David

This week I had my quarterly appointment with my consultant Dr Pinto. He asked me how I am doing, and I had to tell him that since Christmas, my limb strength has deteriorated dramatically. He didn't seem surprised, which was disappointing, as up until Christmas, I thought I was doing really well, better than the average MND life expectancy after diagnosis, of between 2 and 5 years. I think that maybe, I will have to accept that I am infact average, rather than extraordinary. 

There is no drug or cure, so he can't do much apart from assess and advise me, and after asking how my respiratory output and swallow was, he asked if I had thought about a feeding tube yet. There are two options available to me. A RIG, which is less invasive but needs changing every few months, or a PEG, that is put in under general anaesthetic, but is virtually permanent, and is easier to maintain. He told me he would refer me to the Gastroenterology department for further discussion and an appointment came through for next week. I cannot fault my NHS care at all. 

My MND care co-ordinator Clare was present too, and she asked how my appetite and weight was, and I told her that despite a good appetite, and the first tummy bulge I have ever had, I am actually losing weight. Both the doctor and nurse agreed it was due to muscle wastage and part of the MND process, as my arms and legs are very thin now. I also had to tell her that recently, I have been suffering from constipation, which as a vegan, has never before been a problem. She's going to refer me to the hospice, as they are the experts in that delicate area, as the majority of their patients are struggling to get enough fluid on board and subsequently struggling with evacuation. I know you didn’t come here for this sort of discussion though, so let's quickly move on. No, actually I have another toilet tale to tell. As I'm not confident of getting to the toilet during the darkness of night, I have started to keep a wee bottle by my bed, and when I use it I try to do so quietly, so not to wake Alice. With this in mind, I tended not to screw the lid on - big mistake! At 5am, the duvet knocked the bottle over on to the rug, I then got a tissue and tried to mop up, and in doing so, knocked over the bottle again! This woke Alice, who then had to go and get the carpet cleaner. We've since bought a little night light, and I've promised to put the lid on from now on. 

One of my Occupational Therapists Abigail, came bearing gifts this week, ankle splints! They fit into my shoes and up to my shins, with a velcro fitting, and are supposed to strengthen my ankles, and help me to lift my feet. I have been wearing them around the house to get used to them, as they feel a bit weird, and I look like Robocop, but if they help me, I don't mind relinquishing some street cred.

A turn for the better in the weather, meant that I could sit out in the conservatory for my afternoon coffee, and the possibility of sitting outside once the clocks change, gets ever nearer. 

The sun continued to shine on our weekend in Brighton. We used the wheelchair access on the train for the first time, and it went very well. The railway staff were very attentive and put a ramp down for Alice to push me on board, and the accessible carriage had room for the wheelchair and both of us comfortably.

We also booked an accessible hotel room, which had a lowered bath and a wetroom with handrails around the toilet and wash basin. 

We travelled on the Friday so that we could fit a parkrun in on Saturday morning, but we nearly didn't make it. We set off from the hotel for Preston Park as it was one of the four Brighton parkruns that we hadn't done, but stupidly, Alice handed me the Google map on her phone for directions. I thought it worked like a compass, so kept the arrow facing north. Apparently it doesn't, and Alice was struggling pushing me up a big hill, in the opposite direction to our destination. She told me in no uncertain terms, that I wasn't doing a very good job. Alice is very patient, and rarely raises her voice. This was a rare occasion, and I was well and truly roasted. Luckily, we met runners going the correct way and got to the start with a couple of minutes to spare and we were the best of friends again! The run was very scenic, and we spotted a few people in green and black, and we made some new friends. 

Despite the lowered bath, I still needed Alice and her trusty handling belt to get me out and for the first time, as she walked me back to the bed, I actually felt like a dead weight and could not hold myself up. I do love a hot bath, but I think the temperature of the water relaxes my already weak muscles, so I might soon have to add baths to the expanding list of things I can no longer do.

We love the vibrant feel of Brighton, and the amazing vegan options too. We had pizza, sushi, and even fish and chips.

Despite the sun, I still suffer with cold hands, which in turn, affects their strength, so for the first time, Alice had to actually feed me. I was a little embarrassed, but this is the reality of the situation, and Alice reassured me that no-one was looking, and if they were, who cares?

The reason we were in Brighton, was to watch and support my daughter Anna run the half marathon, and she absolutely smashed it!

She had been training hard during the cold, dark and wet days of winter, and in the spring sunshine she bloomed. It was very emotional as she ran into the finish, and we were all in tears as we congratulated her afterwards. She wore a Tintin badge on her MND vest, and her Baker socks to give her strength as she ran, and she raised over £1000, so she is rightly pleased with herself, and I am so proud of her. 

Alice and I whisked her and my other daughter, Rachel, who is in training for the Great South Run in October, away to a spa break at the Rose Bowl cricket ground in Southampton, and it was very posh.

The rooms were lovely, the spa was one of the best we'd been to, the vegan and gluten free options at breakfast were very impressive, and the view from the restaurant of the pitch, was amazing. All in all, we had a very relaxing couple of days. 

I took my electric scooter on the bus for the first time this week and went to the hospital to support one of Alice's colleagues, Sue, who is running the Brighton marathon in April for the MNDA.

She was holding a cake sale, and the table was full of lovely home bakes, of which I had four! Sue also sold mile ribbons, tracks for her Spotify playlist (Alice added Superman by Black Lace) and there was a finish time sweepstake.

It was nice to see so many of my old colleagues, and Sue raised nearly £500 for her JustGiving page, bringing her total to nearly £1000!

On returning to the house, as I struggled to get inside without anyone to help me, Teddy, who has been a house cat for all of his 3 years, saw an opportunity, and hopped out. As I'm not very steady on my feet, I tried to coax him back in with the head of a broom, but he wasn't ready to relinquish his new found freedom, and he slowly walked away from the front door, sniffing and investigating this new environment that we call outside. I knew at this point that I couldn't run after him, so after shaking a bag of crunchies at him to no avail, I sat down in my chair with the front door open, watching him explore our front drive. I couldn't phone Alice at work, as I knew she would be upset and worried, so with a horrible feeling in my stomach that he would run away and we would never see him again, I just hoped he would come back to where he's loved (and fed!). After seeing him jump the wall and disappear, I feared the worst, but five minutes later he popped his head through the doorway, and sauntered back in as though it was an every day occurrence. This gave us the confidence that he does infact love us (or the food), and we've since let him out four more times, and each time he has returned to his family. 

This year, I was lucky enough to have a Saturday birthday, so I have just enjoyed a lovely birthday weekend!

On Friday night, my old colleagues in the Research Department arranged a masquerade charity ball, raising money for the hospital charity, and also the MNDA, and I was the special guest. After a sumptuous meal listening to a pianist, I gave a speech about my MND journey, while Alice was sat at the back, projecting photos of me at various stages throughout my life, onto the screen behind me. I had given this speech twice before to an audience, but never to my friends and colleagues, and I found it quite emotional. Alice had to come and support me at one point, but I regained my composure and got through it.

Alice helped me back to my seat, and it was time for the DJ and the dancing, but his first words were "I think we have a birthday boy in the room?" And with that, the lights were on me as they brought in a lovely large cake with candles alight. As they all sang Happy Birthday to me, both Alice and I were both thinking how embarrassing this was going to be as we would have to say that we can't eat it, but Gemma, who had organised the ball, came over and told us not to worry, as it was vegan and gluten free. It was made by a Michelin star chef too! 

I said to Alice that I probably had one dance in me, but with the help of Alice and my stick, I stayed on the dancefloor for three songs. I told her I was dancing like an old man at a wedding, but she told me I looked just like my dad dancing at our wedding which made me feel better.

After a brief rest, as the evening was coming to a close, I returned to the floor, and with my wife on one side, and my work wife, Rachel on the other, I danced to a Grease medley and old blue eyes singing My Way, before we retired, exhausted to our beds.

Saturday was my 59th birthday and how do you think we celebrated? parkrun of course! We stayed local in Southampton, and 19 of our vegan runner friends came to celebrate my birthday, and with the strength of recent training sessions, and the empowerment of International Women's Day, Alice pushed me to a personal pb of over a minute - what a woman!

We all went out for breakfast, then after a nice birthday nap in the afternoon, Alice and I put on our best togs, and went out for a meal at our favourite Indian restaurant, just the two of us, and just right. A perfect birthday. 

On Sunday, we were back up on Southampton Common for a speed training session run by one of our lovely running friends, Gwenda, and we all shared my birthday cake afterwards. Alice, and our friend Andy, one quarter of Team Baker, pushed me in training for our marathon in the capital, while the other two, Anna and Martin, have also been treading the tarmac, in readiness for London. 

Talking of fundraising, my son-in-law, is a week into 30 minutes of movement every day in March and has so far walked, run, mowed, strimmed, cycled, and has also been in the cricket nets. So thank you to Anna for running like a rockethorse, to Sue for raising dough, and to Max, who likes to move it, move it, every day. 

So I've had a lovely two weeks, including a birthday weekend, but I'm very tired and I'm looking forward to going to bed with my birthday present from my daughter Rachel, a hand knitted gherkin!

Alice also bought me a present that I'll have to wait for, but it's worth the wait! Tickets to see the band Mud. They were my childhood band and I've never seen them live so I'm looking forward to August!

One of the questions that I am asked as part of the MND Smart research trial monthly video diary, is if I can turn over comfortably in bed, and up until now I have answered that I have no difficulty. I have noticed recently though, that it is becoming harder to pull my torso from one side to the other, as the strength in my arms has weakened. My legs are equally weak, and my walking with someone holding my arm, is probably down to about 50 yards now. Obviously, I'm not happy about this but when I was diagnosed, I set myself a target of still walking for Rachel's wedding last April, then my target was the end of Summer, then Christmas, and finally my birthday. So I'm still just about on my feet and my next target is the start of Summer! I won't throw my flip flops out just yet.

Winter? Tow it out and sink it.

I'm heading for better times and warmer clime's!

PS; Please spare a thought for the family of an MND warrior we lost this week, the soul singer Roberta Flack. I've been listening to her beautiful voice since I heard the sad news, and I invite you to do likewise x